Malakai Levi Miller

Miraculous Malakai’s Story It all began with two positive pregnancy tests and lots of excitement. It was my boyfriend and I’s first child so you can imagine how excited as well as scared we both were, but we figured we would have a healthy baby just like every couple wishes and hopes for. Everything started out great. Lots of sonograms and appointments and by 18 weeks we found out we were having a boy! You can imagine how happy daddy was to hear that but mommy was too 🙂 At the 18 week appointment they also found two cysts on his brain but we were assured that these were quite normal and most babies have them early on in the pregnancy then they go away. Very rarely do they amount to anything. So since I was reassured by the doctors we continued to prepare for our baby boy and not stress anymore than what need be. We also decided on a name, Malakai Levi. The weeks passed and our appointments continued and everything looked good until around 26 weeks they noticed the cysts still were there and they were also concerned with his growth. He was measuring about 2 weeks behind, so they decided to send me to a 2nd level ultrasound to find out more. I was worried but kept reassuring myself that my baby would be just fine. I was constantly feeling him wiggle so he helped reassure me too.

We finally made it to the 2nd ultrasound date which was October 17th, 2014. My boyfriend ended up having to work so my mom went with me and we were both so excited to see Malakai on the sonogram because we knew that this hospital had better equipment. We got started and I got to see my beautiful baby on the big screen and his face was just so detailed and gorgeous. Nothing looked off to me, but the ultrasound tech spent quite a bit of time measuring every little part of him and even re-measuring. This being my first child I thought nothing of it and continued to stare at my beautiful Malakai. She then told me we were all done and sat us in the exam room waiting to be seen by the doctor. As soon as the doctor walked in I could tell something wasn’t right. He sat down and then told me that they had found several “markers” for Trisomy 18. His markers included: clenched hands, overlapping fingers, shortened forearms, dilated kidneys, dilated bowel, and several heart defects. He also informed me that 50% of these babies are stillborn and 10% of them make it to their first birthday. I sat there…stunned. I had never even heard of Trisomy 18. Of course my mom and I were in tears asking the doctor if there was any possibility that he would make it and he said there was a small chance but more than likely no. I was heartbroken. My world shattered to pieces. Here I was, 28 weeks, thinking my baby was just fine and then being told he wasn’t. I remember Malakai even kicking me while the doctor was telling me that most people consider Trisomy 18 “incompatible with life.” He then told me that in order to confirm that he had Trisomy 18 we would have to do an amniocentesis or we could choose to wait until he got here to test him.

We chose to do the amnio and I asked if we could have some privacy so I could call my boyfriend and tell him to get off work and come to where we were. I’ll never forget that phone call. I could hear him start to cry when I shared that our baby boy had so many issues. When he made it up to the hospital they did the amnio and told us that the results would be in in 3 days or so. We went home feeling helpless and hopeless. I remember going home and Googled Trisomy 18 and finding nothing good from it. I read so many heartbreaking stories about these parents that had lost their children. I couldn’t handle it. I wanted to crawl into a hole and never come out if we are being honest. We both took a week off from work and locked ourselves in the house, letting things sink in bit by bit. We didn’t want to face reality. Reality was cruel. When we went back to work so many people had so many questions and all that I could tell them was what the doctors told me. Right after the diagnosis, I won’t lie, I loved feeling him move and wiggle but at the same time it hurt so bad emotionally. I was so scared of our future and where we were going to end up. I thought about losing my Malakai and I couldn’t stand the thought of it. After a couple of weeks of moping around, I’m not sure what entirely snapped in me, but I started doing more and more research on his issues and then it got real interesting. I started finding parents who were fighting alongside their children to keep them alive, happy, and thriving in life. I was finding kids of different ages with Trisomy 18 and even adults with Trisomy 18. I was realizing that all hope wasn’t lost! I was finally starting to embrace my pregnancy even more than what I had before the diagnosis. Don’t get me wrong, it was still very difficult and I knew we had a long road ahead of us but we also knew that as long as Malakai was fighting, we would fight with him.

We continued the pregnancy doing “normal” things that you would do. Mommy and daddy made sure his room was the prettiest in the house 🙂 We knew if we were lucky enough to bring him home then we wanted it to be perfect, just like him. We continued going to appointments and found out more about his heart defects. During pregnancy we found out he had a small VSD, which is a hold in the middle of the heart but the cardiologist said that he wouldn’t think he would need surgery immediately after birth. During our ultrasounds we continued to see his kidneys be dilated and his bowel be dilated but sadly we wouldn’t know how those would affect him until he was out of the womb. On December 2nd, 2014 we met with the neonatal team, our maternal fetal medicine doctor, nurses, and social workers to discuss how much of a medical intervention we wanted for Malakai. All that we asked was that they treat him like they would a “normal” baby. By normal I mean a baby without his diagnosis, just because his diagnosis is seen as very hopeless by most of the medical community. We were assured our wishes would be granted and as long as our little boy was showing some fight then they would as well. We made it clear that only if he was uncomfortable or in pain then we would give up and expect comfort care be done after. We also set a c-section date for January 3rd which would put me at 39 weeks. I was praying and hoping our little guy would make it to 39 weeks. We continued appointments as usual. Nothing seemed to change. It was showing that he was growing a bit more but still weeks behind in growth. We were proud of every little thing he did. He was practicing his breathing and always such a wiggle worm. I’m convinced it was to let me know he was okay.

Two weeks before the c-section date the nurse practitioner informs me that all of the team had a meeting and moved the c-section from January 3rd to December 27th. I was in shock but really excited to be seeing him sooner! Our last appointment before the c-section was the day before and he was still doing really well in the womb. None of his issues had bettered but they hadn’t gotten worse either. We were happy that it was looking like we were going to have a live baby! That was our goal. A live baby. No one should have to think about burying their child. The c-section was scheduled for 8am, but we had to be at the hospital by 5am. When we got there I was so anxious I couldn’t stop puking. They got me on my IV and started pushing fluids. Those three hours passed a lot faster than what I thought they would. Before long I was back in the operation room getting the spinal. At this time I chose to just get the spinal and no morphine in the spinal because I wanted to be alert the first time seeing him. They let my boyfriend in once they had gotten me numbed and situated and he held my hand while we both rested each other’s heads together just waiting to hear a cry. Suddenly we heard a little whimper… our baby boy.

I’ll never forget the first time seeing him and I’ll never forget the look on my boyfriends face. You could feel the love swirling in the room. You could see it in both of our eyes. Our Malakai instantly had us wrapped around his finger. They took him over to the warmer to see how he was doing. They had to give him a couple breaths but he started breathing. They put a cannula in his nose for oxygen but he was breathing at room air (21%). The neonatologist came over and told me everything that was being done and saying that he was okay and really beautiful then asked me before they take him up to the NICU if I wanted to see him for a second. Of course I wanted to. They brought him over and my goodness. He was more beautiful than I could have ever imagined. I gave him a kiss and told him I loved him. Then they took him to NICU. I told my boyfriend to go with him because I didn’t want him to be alone, and I had to get sewn up and wait in recovery for at least an hour and a half before I would be able to be wheeled down to see him. That hour and a half felt like a year. It felt so good though to know that for right now. He was alive. He was breathing. That’s all that mattered. I finally got to see him. Sadly I wasn’t able to hold him quite yet. I just sat in my wheelchair and watched him sleep. Hours passed. I didn’t care. I didn’t want to be anywhere but with him. My boyfriend, my mom, and I would take shifts being with him because we didn’t want him to be by himself. I stayed up for the first 48 hours because I didn’t want to sleep or leave him. Then one of the nurses pretty much told me I HAD to get sleep otherwise I wouldn’t be able to take care of him. Didn’t help that when he had been here around 30 hours… the doctor told us he had a complete obstructive bowel which was going to require surgery, and fast. At 31 hours old he went into major surgery. I kissed him thinking that’s the last time I would kiss my baby. I’ll never forget that feeling of thinking that this is it… this is how I’m going to lose him. My boyfriend and I walked down as far as we could with him and met up with the doctors. I held myself together until we headed back towards the elevators and then we just held each other and cried. Hoping that we would see him again and they would be able to fix it entirely and he wouldn’t need any more surgery on his bowel.

Two hours later the surgeon comes down. Everything went perfectly! Couldn’t have gone better is what the surgeon said. We were floored and so grateful that our little guy was/ is such a fighter. He had already beaten the odds being born alive and now he’s not even two days and has survived major surgery? Amazing. We got to go down and see him and he was doing as well as he could be doing. We were so proud of him. The next night wasn’t as great… he had an episode where his chest clamped up and he stopped breathing and starting turning purple. Immediately three nurses and the doctor is there giving him breathes. It was the most terrifying thing I’ve ever seen. Not being able to help your child and thinking you’re watching them pass away. They give him one breath and his numbers start crawling back up to what they should be. The next day was much better, he finally got extubated, which is a fancy term for saying they took his breathing tube out and he was doing just fine with his oxygen at 21% CPAP +6. One of the nurses even said that his episode was possibly caused by the breathing tube. Sometimes that can happen. We have yet to see another episode like that and I hope we never have to.

Since then we have met with a cardiologist and after reviewing his echocardiogram he says Malakai is facing a number of issues with his heart. Not just the VSD that we thought before. He has coarctation of the aorta, overriding aorta, thickened ventricles, and a large VSD that is in the membrane. Since membrane doesn’t grow he will have to have open heart surgery in order to fix the VSD. Thankfully his ultrasounds have shown that he has fluid on both of his kidneys but his right one seems to be functioning quite well. His left seems to not have any function. We are taking it a day at a time but looking for surgeons now for the surgery to be done. We don’t know how much time we have until his heart will give out. He is doing fine right now but that could change very quickly. His last big hurdle will be his heart surgery.

Disclaimer: The content of this page does not reflect the views of the Trisomy 18 Foundation. The Trisomy 18 Foundation offers this space to parents as part of the Support Program. Parents have control over how they tell their child's story as well as which pictures they feel comfortable sharing with the Community.